Tag Archives: multiple sclerosis

‘Performance Scale’ is a poem about Genna Gardini’s personal experience of being diagnosed with Multiple Sclerosis (MS). It was adapted into a film by three people close to Gardini and personally affected by MS. The film was created as part of Gardini’s 2016 ICA National Fellowship project MS Independent: Diagnosis.

Written by Genna Gardini
Directed by Gary Hartley
Performed by Amy Louise Wilson
Filmed and edited by Francois Knoetze
A Horses’ Heads Production, created with the assistance of the Institute for Creative Arts.

The startling fact was this: my body was offering a precise physiological equivalent to what had been going on in my mind.
Joan Didion, The White Album.

1:

I spent so many years attacking my body,
finding fault in faint abundance, obsessing over every lack
that it didn’t surprise me when I woke up one morning
to discover that it was finally fighting me back.

2:

This was the year you kept killing all the machines you owned
and that is what we refer to as a “running motif”
(and that is what we refer to as “dramatic irony”).

3:

You’ll come to,
conked out on some strange cistern in a Southern Suburbs mall,
your legs hinging against the plastic billboard of the bathroom door,
angled in the jamb like damp cardboard
folded and forced into a full stop.

4:

This is paper as metaphor and limbs as punctuation.
This is the reverse of writing.

5:

You’ll find your phone lying, lesioned, next to you,
a fissure fresh down its crustacean container
like a phantom crack. Like a mime at a wall,
bucking but flat.

6:

You’re tipped against a nurse
whose prophylactic palm pats nerved and certain on your neck.
You have heard her tell the others that they are good girls.
You are not a good girl
because when she sets you straight on the mat, then the scale,
she only says, “Try not to hurl”, then
“You must make a note of your weight”.

7:

The zinging technology of your mouth
steams against the frosted door of the consultation room.

8:

She is warm and alive as an urn at the Church fete
and you are the Styrofoam cup
leaning at her tap.

9:

“Look at it this way, at least you’ll be skinny!”
is quite a funny thing to say to someone
when you think they could be dying.

10:

You began to let your bob grow unbidden,
split and wrought
because if a part of your physicality still chooses to thrive
who are you cut it short?

10:

You make these kinds of jokes.

11:

You are convinced that the nails and hair of a corpse
inch out past conclusion, intrepid as weeds, eternal as worms,
eyeless and edging in all directions, past even the last right
to scratch into life. This is poetry, I thought,
before I was told that I was wrong.

12:

You retract back into yourself, creating the illusion of growth,
moving like a skirt hitched above the knee, balking as if in shock
pressed against the back of the closest ablution block.

13:

At 27, I became blind in one eye
but didn’t realise, because I only notice my mouth.
I thought perhaps a crack had formed between my head
and the cheese-cloth membrane of my disbelief.

14:

Speaking is uncertain and pinpricked.
It is shrouded. It is grief.

15:

Every bad thing that’d happened to me before
was because a man had decided to teach me a lesson
and this is why, after I found out,
I had to reconsider atheism.

14:

You are turning a manuscript into a
fan with the bridging press of pleats.
You are not Keats.

15:

The good doctor made eye-contact with me for the whole beat
which I know is supposed to convey the meaningfulness of the moment
because of my expensive acting degree.

16:

Raisins injected with water.

17:

Thinned the way paint under the slow drip of turpentine is.

18:

I pick this bed because of its proximity to the TV. I am surrounded by women who are in various states of collapse. One spends each day lamenting the canteen’s slopped and unbroiled chicken ala king, sending voicenotes to her daughters to remember to let the cat in. The others cannot walk. I do not want to know them. I do not want to admit that I am one of them. At first, I shuffle, hesitantly, like it’s a character choice, until I realise I am not performing and the gimmick has stuck, gammy. My legs lurch and twitch beyond me.

19:

I look up and there is nothing.

I look down at my own arm, which the nurse has stuck so repeatedly, finding me false and veinless, that the blood clotted before it gathered, like I was a boring meeting they wanted to leave and this might be the exit.

I look up and she is staring straight at me.

Her face is wide and aimed. I pull out my earphones but she is whispering. I say her name. She is mouthing something and I do not know the words but I know that what she is saying is help me and I cannot even help myself

which is why I am plugged into a wall like a faulty Blackberry on charge
which is why I am connected to wet metal that looks like a clothes horse,
which is why I am making so many Joan Crawford wire hanger jokes.
This means help me.

I thumb the call button. The station, which perpindiculates next to us is unlike, myself, without staff. I use the IV as a cane and I call out but the movement of my voice is as interrupted as my legs, cramped, boned by pain. There is a sound here, it rings out, clean and to the side as a scalpel. Panic is a disinfected metal knife, it slices me from myself, each thought going into the brain instead of the mouth, bounced like an email sent to the incorrect address. The prospect of the seizure is thick and electric in her bones, I can see it. The day before, her family had come to visit. Two of them explained how this latest bout was caused of the evil thoughts she allowed to enter her head. She must lose them. My own – which buzzed, a constant cortex, old and reliable as a Cortina that has been veering for years, cutting breaks and ties with whoever passed me by – stay stuck. I wish I had a demon but I don’t, I have my legs and I run past corn rows of beds to find some assistance